Disability and Health Journal最新文献

{"title":"Parents’ perspectives on conversations about prognosis and an assessment of prognostic information available online: A mixed-methods study","authors":"Akira Gokoolparsadh ,&nbsp;Meg Bourne ,&nbsp;Alison McEwen ,&nbsp;David J. Amor ,&nbsp;Erin Turbitt","doi":"10.1016/j.dhjo.2024.101718","DOIUrl":"10.1016/j.dhjo.2024.101718","url":null,"abstract":"<div><h3>Background</h3><div>Conversations about prognosis for genetic neurodevelopmental conditions are becoming more frequent; however, there is a lack of evidence and guidance on how to approach these conversations and frame the information being provided.</div></div><div><h3>Objective</h3><div>(1) To understand how parents perceive prognostic conversations with healthcare professionals and their preferences for these conversations, (2) To investigate the framing of prognostic information found online.</div></div><div><h3>Methods</h3><div>This was a mixed-methods study, comprising of (1) a thematic analysis of interviews with parents and (2) a quantification of prognostic information available on the internet that portrayed a negative message. The strategy to classify the framing of prognostic information was defined iteratively, informed by the information found online.</div></div><div><h3>Results</h3><div>We interviewed 32 parents from across Australia. Parents had a child with a genetic neurodevelopmental condition, such as Fragile X syndrome (28 %), 22q11.2 deletion syndrome (16 %) or Angelman syndrome (16 %). Parents reported their preference to discuss their child's potential strengths as well as challenges regarding prognosis. They reported that conversations about prognosis often focused on the child's possible deficits and that online information they encountered was similarly framed negatively. Our analysis of online information confirmed parents accounts: 95.3 % was coded as negative, while only 4.7 % was positive/neutral.</div></div><div><h3>Conclusions</h3><div>Our data provide evidence of an over-emphasis of deficit-framed prognostic information about genetic neurodevelopmental conditions. The initial exposure to negative information may adversely affect parents’ psychological well-being and expectations, which future research could address. Health professionals could consider strengths-based framing of prognostic information gained from current and emerging technologies when returning results to families. Findings from this study can help to inform health communication practices as well as online content development.</div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"18 2","pages":"Article 101718"},"PeriodicalIF":3.7,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142478905","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"One-year employment outcome prediction after traumatic brain injury: A CENTER-TBI study","authors":"Helena Van Deynse ,&nbsp;Wilfried Cools ,&nbsp;Viktor-Jan De Deken ,&nbsp;Bart Depreitere ,&nbsp;Ives Hubloue ,&nbsp;Ellen Tisseghem ,&nbsp;Koen Putman","doi":"10.1016/j.dhjo.2024.101716","DOIUrl":"10.1016/j.dhjo.2024.101716","url":null,"abstract":"<div><h3>Background</h3><div>Traumatic brain injury (TBI) can come with long term consequences for functional outcome that can complicate return to work.</div></div><div><h3>Objectives</h3><div>This study aims to make accurate patient-specific predictions on one-year return to work after TBI using machine learning algorithms. Within this process, specific research questions were defined: ¹ How can we make accurate predictions on employment outcome, and does this require follow-up data beyond hospitalization? ² Which predictors are required to make accurate predictions? ³ Are predictions accurate enough for use in clinical practice?</div></div><div><h3>Methods</h3><div>This study used the core CENTER-TBI observational cohort dataset, collected across 18 European countries between 2014 and 2017. Hospitalized patients with sufficient follow-up data were selected for the current analysis (N = 586). Data regarding hospital stay and follow-up until three months post-injury were used to predict return to work after one year. Three distinct algorithms were used to predict employment outcomes: elastic net logistic regression, random forest and gradient boosting. Finally, a reduced model and corresponding ROC-curve was created.</div></div><div><h3>Results</h3><div>Full models without follow-up achieved an area under the curve (AUC) of about 81 %, which increased up to 88 % with follow-up data. A reduced model with five predictors achieved similar results with an AUC of 90 %.</div></div><div><h3>Conclusion</h3><div>The addition of three-month follow-up data causes a notable increase in model performance. The reduced model - containing Glasgow Outcome Scale Extended, pre-injury job class, pre-injury employment status, length of stay and age - matched the predictive performance of the full models. Accurate predictions on post-TBI vocational outcomes contribute to realistic prognosis and goal setting, targeting the right interventions to the right patients.</div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"18 2","pages":"Article 101716"},"PeriodicalIF":3.7,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142559212","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The effects of poor housing conditions on depressive symptoms in persons with disabilities: Do neighborhood resources and residence type matter?","authors":"Gum-Ryeong Park, Saud Haseeb, Eun Ha Namkung","doi":"10.1016/j.dhjo.2024.101712","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101712","url":null,"abstract":"<p><strong>Background: </strong>Poor housing conditions pose significant risks to the health of persons with disabilities. However, it is not well understood how and for whom the relationship between housing conditions and health is more pronounced.</p><p><strong>Objective: </strong>This study aims to estimate the association between poor housing conditions and psychological health, and to explore whether residential characteristics, such as residence type and proximity to community resources, mitigate these risks for community-dwelling adults with disabilities.</p><p><strong>Methods: </strong>Data were obtained from three waves of the Disability and Life Dynamic Panel (n = 5,058), a nationally representative study of individuals with disabilities in Korea. Our sample were limited to those aged 20 or older for the purpose of this study. Individual-level fixed effect analyses were conducted to assess the longitudinal association between poor housing conditions and depressive symptoms, accounting for individual-level heterogeneity. We also tested the moderating effects of the residential characteristics, including proximity to community resources and residence type.</p><p><strong>Results: </strong>Poor housing conditions, characterized by structural unsafety and inadequate ventilation, lighting, and noise protection, were associated with increased depressive symptoms among adults with disabilities. The negative impact of poor housing conditions on depressive symptoms was less pronounced for those living close to community services or in apartment complexes where housing conditions are professionally managed.</p><p><strong>Conclusions: </strong>The study indicates that the quality of housing and neighborhood environments affect the psychological health of adults with disabilities. These findings support for the need for place-based interventions aimed at improving the residential environments of community-dwelling adults with disabilities.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101712"},"PeriodicalIF":3.7,"publicationDate":"2024-10-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142394667","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Physical activity as a mediator in the relationship between health locus of control and health-related quality of life in multiple sclerosis patients with different disease duration.","authors":"Maciej Tomczak, Małgorzata Walczak, Waldemar Brola, Aleksandra Walczak, Magdalena Koper, Bartosz Chmielewski, Maciej Wilski","doi":"10.1016/j.dhjo.2024.101638","DOIUrl":"10.1016/j.dhjo.2024.101638","url":null,"abstract":"<p><strong>Background: </strong>The importance of undertaking physical activity for functioning of patients with multiple sclerosis (MS) has been repeatedly highlighted. However, the research on the role of physical activity in shaping the quality of life of patients with different disease duration is scarce.</p><p><strong>Objective: </strong>The aim of this study was to identify the mediating role of physical activity in the relationship between health locus of control (HLoC) and health-related quality of life in MS patients with varying disease duration.</p><p><strong>Methods: </strong>The study included 339 patients with MS from rehabilitation centers. The Multiple Sclerosis Impact Scale (MSIS-29) was used to measure health-related quality of life, physical activity was assessed by the Godin Leisure Time Exercise Questionnaire (GLTEQ) and the Health Locus of Control Questionnaire was used to measure HLoC.</p><p><strong>Results: </strong>Physical activity has been shown to be a mediator in the relationship between intrinsic HLoC and health-related quality of life particularly in patients with longer disease duration. Intrinsic HLoC was positively associated with engaging in physical activity, which in turn was positively associated with the physical component of quality of life in patients with longer (indirect effect: β = -0.077, p < 0.05) and moderate (β = -0.040, p < 0.05) duration of illness.</p><p><strong>Conclusion: </strong>The results highlight the importance of psychological resources for undertaking quality-of-life-related physical activity by MS patients with long disease duration. Particularly important here is the internal HLoC, which promotes physical activity that increases the chance of a high quality of life.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101638"},"PeriodicalIF":3.7,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140960526","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Transportation for people with intellectual and developmental disabilities in Home- and Community-Based Services.","authors":"Carli Friedman","doi":"10.1016/j.dhjo.2024.101708","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101708","url":null,"abstract":"<p><strong>Background: </strong>Transportation can help improve the health, quality of life, and community integration of people with intellectual and developmental disabilities (IDD). Yet, transportation is one of people with IDD's most common unmet needs.</p><p><strong>Objective: </strong>The aim of this study was to examine if, and, how, states provide non-medical transportation to people with IDD in their Medicaid HCBS programs.</p><p><strong>Methods: </strong>Using content analysis and descriptive statistics, this study analyzed fiscal year (FY) 2021 Medicaid HCBS 1915(c) waivers for people with IDD from across the nation to examine how they allocated transportation.</p><p><strong>Results: </strong>In FY 2021, all 44 states and the District of Columbia with HCBS waivers for people with IDD provided transportation services. Transportation was included either by providing a stand-alone service that exclusively provided transportation, or by being embedded within another service. Transportation was embedded within 896 different HCBS services for people with IDD, most commonly within residential habilitation services (26.70 %), supported employment services (19.44 %), and day habilitation (18.44 %). Thirty-three states (73.33 %) also provided 145 different stand-alone transportation services in their programs for people with IDD, to increase community integration and help people gain access to waiver services. A total of $781.78 million of spending was projected for stand-alone transportation services for 261,109 people with IDD (30.32 % of waiver recipients).</p><p><strong>Conclusions: </strong>HCBS waivers are an important resource for providing transportation for people with IDD. However, significant variation in how states do so may result in disparities or unmet needs.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101708"},"PeriodicalIF":3.7,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142299400","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Author Information","authors":"","doi":"10.1016/S1936-6574(24)00144-4","DOIUrl":"10.1016/S1936-6574(24)00144-4","url":null,"abstract":"","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"17 4","pages":"Article 101699"},"PeriodicalIF":3.7,"publicationDate":"2024-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S1936657424001444/pdfft?md5=40ab98f508312448c561d18e438fccb7&pid=1-s2.0-S1936657424001444-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142168452","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Still Missing","authors":"Margaret A. Turk MD ,&nbsp;Monika Mitra PhD","doi":"10.1016/j.dhjo.2024.101686","DOIUrl":"10.1016/j.dhjo.2024.101686","url":null,"abstract":"","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"17 4","pages":"Article 101686"},"PeriodicalIF":3.7,"publicationDate":"2024-08-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142037524","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Inequities in medicaid home- and community-based services waiver enrollment among people with intellectual and/or developmental disabilities: A nationwide claims-based analysis.","authors":"A Alex Levine, Megan B Cole, Amy Lynn Michals, Na Wang, Eric Rubenstein","doi":"10.1016/j.dhjo.2024.101676","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101676","url":null,"abstract":"<p><strong>Background: </strong>States use Medicaid 1915(c) waiver programs to enable access to home- and community-based services for people with intellectual and/or developmental disabilities (I/DD). However, enrollment rates and potential inequities are not well documented, impeding efforts to improve care access and quality for waiver program enrollees, especially for racially minoritized beneficiaries experiencing compounded barriers to services and supports.</p><p><strong>Objective: </strong>To characterize year-by-year 1915(c) waiver program enrollment among Medicaid-enrolled adults with I/DD from 2016 to 2019 and to analyze population-level inequities by type of I/DD and racial/ethnic group.</p><p><strong>Methods: </strong>Our data source was 2016-2019 Medicaid Transformed Medicaid Statistical Information System Analytic Files Demographic and Eligibility files for beneficiaries with Down syndrome, autism, and intellectual disability. We used generalized estimating equation linear models to estimate the associations of type of I/DD and racial/ethnic group with the probability of 1915(c) waiver program enrollment and reported (1) unadjusted estimates and (2) estimates adjusted for demographics with state and year fixed effects.</p><p><strong>Results: </strong>From 2016 to 2019, across all types of I/DD and racial/ethnic groups, unadjusted 1915(c) waiver program enrollment rates ranged from 40 to 60 % nationwide. We found modest growth in 1915(c) I/DD waiver program enrollment but persistent inequities over time. Compared to beneficiaries with intellectual disabilities, beneficiaries with autism were less likely to enroll while beneficiaries with Down syndrome were more likely. While some racial/ethnic groups had higher unadjusted mean enrollment, after adjustment, racially minoritized beneficiaries were 3.66-12.0 percentage points less likely to enroll compared to white non-Hispanic beneficiaries.</p><p><strong>Conclusions: </strong>Given extensive waiting lists for 1915(c) waiver programs, Medicaid programs should evaluate existing enrollment and authorization processes and consider alternative HCBS program authorities.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101676"},"PeriodicalIF":3.7,"publicationDate":"2024-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890619","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Unmet needs for long-term services and supports and associations with health outcomes.","authors":"Joseph Caldwell, Elad Daniels, Kaitlin Stober","doi":"10.1016/j.dhjo.2024.101678","DOIUrl":"https://doi.org/10.1016/j.dhjo.2024.101678","url":null,"abstract":"<p><strong>Background: </strong>The availability of population-level data on unmet needs for long-term services and supports (LTSS) is limited at state and national levels. Data on unmet LTSS needs can improve our understanding of disparities and relationships with health outcomes.</p><p><strong>Objective: </strong>1) Explore differences in unmet LTSS needs by socio-demographic characteristics, including age, sex, race/ethnicity, metropolitan status, sexual orientation, and socio-economic status; and 2) Examine associations between unmet LTSS needs and health/preventative healthcare outcomes.</p><p><strong>Methods: </strong>We used the 2021 Behavioral Risk Factor Surveillance System (BRFSS) core survey and state-added LTSS questions to analyze a sample of adults with LTSS needs in Texas (N = 1232). We compared socio-demographic characteristics between adults with and without unmet LTSS needs. We conducted modified-Poisson regressions to estimate unadjusted and adjusted risk ratios (with 95 % confidence intervals) for each health/preventative healthcare outcome among adults with unmet LTSS needs. Health outcomes included health status, healthy days-physical health, healthy days-mental health, suicide ideation, and multiple chronic conditions. Preventative healthcare outcomes included routine check-up and flu vaccine.</p><p><strong>Results: </strong>Among adults with LTSS needs, those with unmet LTSS needs were statistically significantly more likely to be younger (age<65), female, higher educational attainment, and non-straight sexual orientation. After controlling for socio-demographic variables, having unmet needs for LTSS was significantly associated with poorer physical and mental health outcomes and suicide ideation.</p><p><strong>Conclusions: </strong>Improved data collection on unmet needs LTSS can assist policymakers, particularly at the state level in guiding reforms to reduce disparities in access to home and community-based services (HCBS) and improve health outcomes.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101678"},"PeriodicalIF":3.7,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141908115","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Additive interaction of disability with chronic conditions on mortality risk in middle-aged and older adults in Spain","authors":"Roberto Pastor-Barriuso PhD ,&nbsp;Iñaki Galán MD, PhD ,&nbsp;Javier Damián MD, PhD","doi":"10.1016/j.dhjo.2024.101672","DOIUrl":"10.1016/j.dhjo.2024.101672","url":null,"abstract":"<div><h3>Background</h3><p>Disability and chronic diseases are prevalent conditions associated with mortality, but little information is available on their potential synergistic effects.</p></div><div><h3>Objective</h3><p>This study aimed to describe additive interactions between disability and chronic diseases on mortality risk in middle-aged and older adults.</p></div><div><h3>Methods</h3><p>A representative cohort of 22,800 community-dwelling Spanish people aged 50 years or older were interviewed for disability with the Global Activity Limitation Indicator and specific chronic diseases in the 2011–12 and 2014 National Health Surveys and subsequently followed up for mortality. Five-year all-cause mortality risks were standardized in each disability-by-comorbidity category through inverse probability weighting. We computed interaction contrasts as the departure of the standardized risk difference for people with both conditions from the sum of the standardized risk differences for those with any single condition.</p></div><div><h3>Results</h3><p>The baseline prevalence of disability was 35.1 % (95 % confidence interval [CI] 34.4 %, 35.9 %). There was compelling evidence of synergistic effects of disability with chronic liver disease, heart diseases other than myocardial infarction, cancer, and cerebrovascular disease, with large positive interaction contrasts (95 % CIs) of 106.7 (−16.4, 229.9), 45.7 (6.9, 84.5), 45.1 (−15.0, 105.2), and 42.9 (−41.0, 126.9) excess deaths per 1000 persons. Less clear synergistic responses were observed for other comorbidities. We found some evidence of antagonism for osteoporosis, with a negative interaction contrast of −18.0 (95 % CI −82.2, 46.2) deaths per 1000 persons.</p></div><div><h3>Conclusion</h3><p>Given the high mortality risk in people with disability, the study of its synergistic effects with target comorbidities can provide relevant information regarding preventive measures.</p></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"17 4","pages":"Article 101672"},"PeriodicalIF":3.7,"publicationDate":"2024-07-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S1936657424001110/pdfft?md5=f1a9f0e210ea5a7ac7d9a89cfd97d1a0&pid=1-s2.0-S1936657424001110-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141762055","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}